The Diary Of Onebrokelady Aged 60 And A Half

Sun_Addict

If you google what Mr SA had it paints a very bleak picture indeed with a very low survival rate. He’s still here 12 years later. I’m glad you found the positive stories. 

Onebrokelady

jwil said:

Glad you are feeling more positive.  Is there maybe something you could do at work which isn't public facing?  Similarly if you did decide to go for ill health retirement, you might be able to find something else or volunteering.

Hopefully it will be easier to tell the DDs once you've got a fuller picture rather than when it's all still very unknown.

Thank you,sadly there are no roles I can do at my hospital that aren’t patient facing. I would be able to claim some benefits though so there’s no rush to find a job and like you say there might be something I can do that’s away from the public. Mu old job cleaning operating theatres would work if it could be done part time but I do t think I have the stamina to actually do that anymore 

Onebrokelady

Willowtree222 said:

Thanks for this OBL. I have to say, I did also Google it and saw that prognosis and sat in shock too. I'm glad there is a support group and that actually, that's not the whole picture and you could have a good quality of life for a long period of time still with the right treatment and care.

I think you're right to seriously consider work. You have shown ready how vulnerable your immune system is. None of us can make your decisions, I think evaluating what is best for you long-term is the way to go. Personally, I'd be looking at retiring, but I know that's easier said than done without being in your exact situation. No matter what, you have your diary friends here to support.

Protecting your mum and daughters is very admirable but please also find support for yourself as well. It's you who has to come to terms with this so find someone that you can be honest with too. It might not be those closest to you, but I think you also need someone behind you to help you whilst your finding out what next. 

Loving the positive side and humour. We do this as a family too and at the hospice we did wonder what others thought of us when we were doing our jokes.

Take care of yourself. X

Yep Google is not your friend in these circumstances 😀 . As for work I am definitely thinking early retirement is the way to go but I’m not going to rush into it. I don’t particularly want to spend my time working and putting myself at risk when I could be doing something for myself. My actual retirement is likely to be cut short now so I want to enjoy as much time as possible not working if I can

I will be able to tel my sister that lives up the road and my best friend and I will have to tell my daughters at some point. There is also a local support group here where I live so I could go to that as well

Onebrokelady

badmemory said:

Please also remember that those google results are always worst case scenarios.  Not that me saying that is any help at all.

Yep you’re right they usually are. I just keep thinking that on Friday I had no idea what was wrong and didn’t feel deathly ill so the only thing that’s changed in the last two days is a diagnosis. I still don’t feel that ill so hopefully if I can keep myself healthy it will stay that way for as along as possible 

Onebrokelady

daisy_1571 said:

Glad to hear things are looking much more positive   sensible to get private appointment to clarify quicker if you need that.

Re retirement- it certainly doesn't mean stuck inside all day if you don't want it to be.  First you'll have time to get house, systems, garden, finances etc in order and the way you want them.  You could look into part time work.  If you won't 'need wages theres all sorts of clubs and organisations.   Knit/natter type craft clubs, libraries often have events on, hobbycraft do in store and online classes, u3a is cheap and you will get a monthly meeting and access to all sorts of information and if you want to you can join any of the associated clubs for very reasonable costs (we are learning musical instruments, do kurling (its different to curling and good fun), an astronomy group, etc), you might have a local wi group, you might find a support group for the lungs (singing and wind instruments are likely to be good for this).  We made it a policy to try something, if we didn't like it that was fine but at least try it.  Obviously there's also many types of volunteering its not all serving in a shop which of course would bring you into more contact with the public - there's back room jobs, advice lines, administration, befriending over the phone or in person one on one with people.   You'll wonder how you ever had time to work  😃 

Daisy xx 

Thanks for this there’s certainly a lot to think about. I know my finances will be affected if I take early retirement but I should be able to claim some benefits that will help. 

Onebrokelady

Sun_Addict said:

If you google what Mr SA had it paints a very bleak picture indeed with a very low survival rate. He’s still here 12 years later. I’m glad you found the positive stories. 

Thanks SA  that’s reassuring. There is a wide variation in how long people have it for and survive. I actually came across a women last night who is only 38 and has got it too 😟she has two young children as well. It says it’s unusual in people under 50 years but a lot of the stories I read were from people who were diagnosed in their late 40s. I’m now 61 so a lot older than some of them. I don’t know how long I’ve had it for, but I’ve had some symptoms since 2021 which they said was nothing to worry about, I’d did have a normal chest  X-ray in 2022 so I’m thinking maybe after then. I’m convinced it’s as a result of having covid which would be good because it not as progressive if it’s down to a one off experience 

Onebrokelady

Well as is usual in my world my plans changed and we ended up going to get the kitten this afternoon 😀she is very cute and is settling in very nicely. She had some food and a drink and used her litter tray and DD just sent me a photo to show me that she is curled up asleep next to her on the settee. I got home about half an hour ago to have a nice hot shower put on my PJs and snuggle up with the cat 🐈‍⬛ 

I’m also not going to see my Mum on Wednesday now because my sister phoned to say they are coming down on Tuesday. It’s kind of a relief actually because it gives me another week to get my head round what’s going on before I see her and it will be nice for her to see my sister and her partner.
Tomorrow I’m going back over to DDs for some more kitten cuddles and we are going to pop over to the local coffee shop she wanted to take me to a few months ago, we didn’t end up going because I was ill so we thought we would do it tomorrow instead. 

I’m going to post a positive of the day every time I post as well just because. Today I jogged up the two flights of steps to DDs flat without having a coughing fit and wasn’t that out of breath 😀

dawnybabes

Could you do something like 111 call handler ? PIP advisor (do you currently claim PIP ? You could look at this if not) 

I’d use the breathing space before you tell people to get your own head around it.  When my DH got diagnosed we kept it a secret for 8 weeks as DS was doing his GCSE’s.  It actually made it easier when we sat him down as we could answer his questions which we couldn’t have done at the start. 

DawnW

I would honestly wait till you have all the information before you make any big decisions OBL. I had a situation some years ago when my GP rang me at home unexpectedly and told me I have leukaemia and that he was referring me urgently to the haematology department at the hospital. This was after a routine blood test for something else, and was a huge shock, the way he just came out with it on the phone, as both my Dad and a cousin had died of leukaemia during the previous few years. And yes, I googled the exact condition the GP guessed was most likely, and it wasn't reassuring, even the most reliable sources.

Anyway, I was duly referred, and I do indeed have some kind of chronic blood malignancy. I have no definitive diagnosis as the consultant didn't feel it necessary at that stage to conduct the painful and invasive bone marrow tests to get a definite diagnosis. She decided that watching and waiting would be best. About 8 years on, I obviously still have it. I have regular blood counts, and it is progressing slowly, but not to the point so far where I have needed any treatment. I get a bit tired sometimes and sometimes have days when I feel unwell - but not often, and these episodes might be due to something else entirely.

Initial test results without any / much context can seem a bit crude, and it is a huge shock to find out or be told in this way. Further investigation, and a proper conversation with a consultant may well prove much more nuanced and help you to make informed decisions for your future.

satchmo1

First: hugs, first and foremost!

Second: take time to let the prognosis sink in, and research what you can do to maintain maximum health. I took maybe 8 weeks before I told my adult sons about my blood condition. Then DS1 asked later if he could ask more questions, we had a few tears but he felt reassured somewhat.

Third: my DH has bronchiectasis, diagnosed in early 20s by a heartless consultant who told him he'd likely not see 50! DH is 70 and hasn't been hospitalised since having pneumonia twice as a child. He exercises his lungs daily using a "breather" gadget which is quite cheap from eBey or the big river shop. He also does Pilates and weight lifts 3x a week.

Fourth: hugs